Over the Last few months I have seen a number of JDFR press releases about their Industry Discovery & Development Partnership Program¹ (IDDP.)

As a proud supporter of JDRF’s efforts to find a cure I am typically happy to read of some strange sounding, very technical program, to address some specific cure avenue or therapy for living with type 1.

Unfortunately I am curious. That curiosity has been trained with a degree in finance and a few decades of reading the business news. I kept wondering about things like “Partnership,” “participation in value creation,” “collaborative relationship,” and the particularly interesting “up to a level of $5 million per program.” In short I wanted to know what the deal is.

So I scoured JDRF’s web page. I sent a request into their contact us link. I found and heard nothing to end my curiosity. Some time passed and another press release came out. This had an email for a contact at JDRF. So I emailed some fair but blunt questions.

• What is the relationship between JDRF and the for profit firm?
• It appears JDRF is acting as a source of venture funding, what returns are expected, contracted or required?
• What percentage of JDRF expenditures towards cures is involved?
• Where is there a statement about JDRF decision makers and conflicts of interest involving investments in these IDDP firms?

They didn’t email back answers - They set up a teleconference.

I did more homework.

I was very impressed and please with the candid answers they provided.

Among the key points we talked about are:

• JDRF has recognized that support is needed to transition academic discovery through the process of product development, trials and approval and into the daily lives of diabetic patents.
• The partnerships are for very specific issues, bringing a product through trials for example.
• These IDDP programs allow JDRF to help improve the quality of life for T1 families by encouraging movement of for profit firms into the market place with promising therapies.
• These agreement help focus entrepreneur talent to being research through trials and to market.
• The for profit partner must meet specific milestones to qualify to receive payments.
• The for profit must demonstrate a matching commitment to the partnership program.
• If the for profit chooses not to bring products to market based on the partnership, JDRF may use the intellectual property to bring products to market with others for profit firms.
• If products come to market as a result of the partnership, the for profit will return a portion of revenue from the product to JDRF, up to a negotiated multiple of JDRF’s research support of the program.
• This return of research funding is negotiated on a case by case basis. It is a means of continuing research funding for other promising projects related to JDRF’s mission.
• While at this time these partnerships represent a fraction of total JDRF research funding (approximately 10 to 15%) it is hoped they can have a positive impact on quality of life.
• JDRF treats these partnerships as it does other research funding. Specifically they are included as research support under program activities on JDRF's financial statement of activities. They are not broken out in JDRF's annual report.
• The partnership programs are held to the same JDRF mission standards as other research expenditures and are a means of supporting specific program that are directly related to JDRF’s mission.
• JDRF has specific ethical guidelines precluding conflicts of interest².

I was able to find a very detailed outline of one of the agreements in the 10K report of one of the IDDP companies.³ It was the full agreement redacted slightly to remove a few specific confidential items. From this and another firms annual⁴ report I found that the possible return of research funds was between 3 and 5 times the JDRF funding.

I was comfortable with the explanations JDRF provided. I appreciate their need to balance disclosure and information overload. While many people would be more confused by some of the information I read than enlightened, I think that it should be more readily available.

I would like to see JDRF’s financial statements break out IDDP funding from more traditional pure academic research. (I would also like to see the funding for both IDDP and academic research broken out into key JDRF mission goals, like; Beta cell replacement, Beta cell regeneration, Auto immunity, Complications, Artificial pancreas, etc.)

JDRF’s 2006 financial statement⁵ says that 167 million was spent on programs. That is 86 cents on each dollar contributed. Management and fundraising was less than 15 cents out of a dollar contributed. This is very good ration of programs to operations. Of the 167 million 131 went to research and 36 to public education. I am told that IDDP programs are bout 10 to 15% of the research expenditure. Like I said I would be happier to see that broken out.

I have seen enough financial hanky panky that I would like to see JDRF statement of financial ethics backed up with some kind of an independent confirmation of compliance, particularly where up to 5 million dollars per project is being advanced to for profit firms to speed bringing advanced technologies to our children’s care. To me work to a cure is too important not to have such ethical practices prominently stated and audited.

Bennet

Dad to two T1 kids.

If you would like to join our effort to help JDRF click here to buy a
Love Ya /Mean It Pin!
http://badshoe.com/lymipin06.htm

Useful Links and notes.

¹ JDRF IDDP Program
http://www.jdrf.org/index.cfm?page_id=103249
http://www.jdrf.org/files/Industry/handout%20industry%20doc.pdf

² JDRF Statement on Conflicts of Interest

http://www.jdrf.org/index.cfm?page_id=105584

³ Sangamo BioSciences, Inc. (Nasdaq: SGMO) SEC filings

http://phx.corporate-ir.net/phoenix.zhtml?c=120938&p=irol-SEC

⁴ Transition Therapeutics Inc. Financial Reports

http://www.transitiontherapeutics.com/ir/financials.php

⁵ JDRF Financial Statements

http://www.jdrf.org/index.cfm?page_id=100991

I read a lot of type 1 diabetes news. Google is particularly good about sending me a daily email with news clippings. If you are interested in getting the same thing click here:

http://www.google.com/alerts?t=1&hl=en&q=diabetes+type+1

You have new Picture Mail!

27 carbs

You have new Picture Mail!

Mickey rice crispy at pizza planet 27
cookies at pp about 60 vary buy type sugar and choc chip 65 oat less
details to follow

We have joined AllEarsNet.com. Click here to go to the new site.

DisneyWithDiabetes.com will soon be joining AllEarsNet.com. We are thrilled to be joining Debs, the site we consider the finest Disney Information source on the Internet.

We hope that we will be able to reach more T1 diabetics and hEAR tips and tricks from more people as a part of AllEarsNet.com

Be careful of "Stroller Management"

Pammers sent this note:

"NEVER leave supplies in the stroller. I placed our small cooler with all of Joey's things in our stroller in a nice shady place (i couldn't bring it on this particular ride). While we were away, some well meaning Disney attendant moved it into full sun and everything inside (including the insulin) cooked. Thank goodness I only live an hour and a half away and we could just go home to give him his next dose.

Moral of the story: never leave your supplies - NEVER."

Good point. Disney does do what we call "stroller management." It is a kind of stroller round up process that keeps the strollers corralled up in one space. Your stroller will move. So Pammers is very right you may want to carry your insulin or get a real good cooler with a lot of cool in it that can take the hot Florida sun.

If you can't take your cooler on a particular ride tell the Disney Cast Member what it is and ask them for help. Most of the Cast are great about helping out.

Thanks for that tip!

Disney Dietary Needs Request form

Here is a link to the Disney Dietary Needs request form. Spring 2006 version as a word document.

http://badshoe.com/GUEST_DIETARY_MATRIX_legal_notice___updated.doc

FreeStyle Navigator™ Continuous Glucose Monitoring System

This look like just about the coolest diabetes management tool ever. Have a look and ask your endo team about it. Ours says they expect Abbott out over the summer and will have more visit at our next quarterly check up.

Here's some links for now:
http://abbottdiabetescare.com/freestylenavigator/qa.aspx
http://www.medicalnewstoday.com/medicalnews.php?newsid=45105
http://www.diabetes-symposium.org/index.php?menu=view&id=152

Bad News: Booby is no longer at WCC

Bobby the Kid has ridden of into the sunset. Whispering Canyon Cafe will never be the same and I see little reason to go back. Bummer.

Bobby was the best show at WDW.

We will track him down and report where we find him.

Cool story. I can't believe a beagle can be taught anything, we have two, so far they have learned where the food dish is but it may just be they look everywhere for snacks and periodically end up at the food dish.

http://www.washingtonpost.com/wp-dyn/content/article/2006/06/18/AR2006061800857.html?referrer=email&referrer=email

I wonder how WDW deals with his diabetes.

I wonder if they have better luck getting carb counts?

http://www.diabetes.ca/section_donations/disneyworld.asp

Free palm carb and nutrition guide.

This is better in that is is free than the one listed below. I would really like a carb data base that was easy to use and search, had a lot of stuff in it, and allowed for user favorites and customization (adding foods deleting items etc.)


http://www.nal.usda.gov/fnic/foodcomp/srch/search.htm

Carol G. wrote:

I highly recommend getting a ketone meter that tests the BLOOD for ketones. This is different than the urine strip ketone test. The meter is made by MediSense and is the Precision Xtra. It tests the ketones in the blood - just like doing a regular glucose check with a strip except you are measuring ketones rather than glucose levels. The urine strip only shows you the ketone levels of several hours ago - the blood strip is accurate to the current time. We were able to tell within a couple of hours that his ketones were clearing out although the urine strips still showed high ketones. Here is a link to info about it: http://www.diabetes123.com/d_0i_191.htm

She also has this to offer:

Also check out Children With Diabetes - http://www.childrenwithdiabetes.com They run their annual conference in Florida. This year it is at Seaworld but next year they are back at WDW at the Coronado Springs Resort in July 07. The conference is for families and children and there are LOTS of great activities for the kids. It is wonderful meeting so many type 1's and their families. Many adult type 1's come too. The website has a great chat room and kept me sane during that first year!

Great idea I should put that link on the side bar.

Bobby the Kid.

OK this doesn't have a lot to do with Diabetes at Disney but when you go to Disney World, book a night at Whispering Canyon for dinner and be sure it is a night when Bobby is working. Wait for one of his tables.

He is the best.

The best show at Disney World - bar none.

Great Guy.
Fun.
Crazy.

Did I mention that he is The Best!?

OK we claim he gave Delaney Diabetes and that is enough to get him on here but other than that he is tip top. (The story of Delaney's diagnosis is linked below some place.... we still blame him every time we see him)

The story of our first adventure with him is here.



Tell him you know us. BadShoe.com

He'll ask if you tip 100%. We did once. He was worth it.

Oh yeah and we bus his tables for him....

Another T1 parent posted over at the DIS about carb counting:

A national best-seller pocket guide for 2006 is now available at local bookstores and discount stores. It's called CALORIE FAT AND CARBOHYDRATE COUNTER by Allan Borushek. It lists over 200 fast- food chains and restaurants plus offers free website support. This miniature book is a National Health Information awards winner, which makes an easy portable reference guide in the parks, costing just $7.99. Main thing to remember, you can always take more insulin 2 hous later, you can't take less! HAVE A MAGICAL DAY!

Good point Cindyrelly. We have one and take it with. You can also get a download into a Palm or Treo. I am playing with it in the test period. $30 to keep it in each Treo. That is $60 of both ZW and I to carry it.

The jury is still out on it. We welcome suggestions for any other Palm based carb databases. I think for $60 buck I may shop around. It works OK but seems to have a lot of extra stuff when all I want is the database.

Talk to your endo before going to WDW and making any changes to the insulin dose.

Our insulin use does changes with all the activity (walking.)


YBGMA (Your Blood Glucose May Vary) LOL maybe the most true statement about T1 ever made right?

On previous strips we found the insulin load decreased but this last trip our total daily dose was up for both kids. Maybe part was having pumpers who were more free to eat as they wanted but the night time basal rates were up too. So it wasn't just eating, they were high at night when tested.


We test like mad.
We test in the parks.
We test late at night.
Here the kids are testing at the Studios.

We were actually running low on strips and we pack a ton of extras. Don't make any adjustments to insulin without testing before and after the change.

Dear Mickey;
An Open Letter to Disney World

You do a great job with many disabilities. Maybe you can make the same effort for families with type 1 diabetes.

The thing we need most is counts of carbohydrates in the foods you sell so we can give our kids the amount of insulin they need. We are not crazy Atkins dieters gone wild. It is a Life Safety Issue Mickey.

I spoke with cast member Mark Jones of Walt Disney World Services for Guests with Disabilities. Mark said that he has not heard from guest that diabetes and carb counts is a concern.

Given my experience trying to surface the issue it is no surprise. It took me two years asking who is responsible for disability issues to get through to him. I expect that most folks give up in that time frame.

Here is a quick sample of comments from March 16, '06 on the American Diabetes Association parents forum:

One parent asked:
1) Has anyone visited WDW with their Type 1 child? Any tips? We are *considering* a visit this summer. But yikes, how to do with a 6 yr old with diabetes?
2) Related to question 1. How do you figure out how many carbs are in restaurant meals that you can't find listed in any of the carb guide books?

Another wrote back:
I went to Disney on February this year, 6 months after T1 diagnosis. I was extremely scared dealing with diabetes. Anyway, Disney was very stressful for me but My son loved it.

A third added:
We went to Disney over New Years. Our son is on the pump. Disney is great and very accommodating, but my biggest, really my only, complaint is that they have no carb counts for their food. You can bring in food of course, but at some point you will probably be buying Disney food.

So, on this one day, the idea of going to Disney with a type 1 child brought out the feelings of, “Yikes, Scared, Stressful, no carb counts.”

Some quick facts over 20 million children and adults have diabetes. Of that somewhere between 1 and 2 million are type 1.

One to Two million people who’s family thinks “Yikes, Scared, Stressful, no carb counts” when they consider vacationing at Disney World.

These kids typically do three to five thousand finger sticks, injections and/or infusions a year. That hurts a kid.

Just give us carb counts. It is the right thing to do and you will make more Mickey. Notice the one parent saying they carry in food so they know the carb count? You are loosing food sales Mickey my pal.

What do you say Mickey how about taking some stress, yikes and scared off these families and help make these families Disney Vacation Magic?

The Accu-Chec MultiClix

This is the lancing device to use at Disney. No changing sharps all the time. No sharps to deal with on the run. Toss it in you pocket with a SideKick and you have a BG kit.

Six shooter barrels load the sharps, no way you or your kiddo gets an accidental cut from an exposed sharp.

http://www.accu-chek.com

From our Special Food Needs Form The Disney food people say:

It is the same Mac& Cheese everywhere, 40 carbs a cup.
Pizza planet Pizza 56 carbs / serving two servings per pie. They say they have 30 or 40 different pizza crusts, this was the one they could give me but it was the one I wanted too.
Same fries almost all places, 3oz = 20 carbs
Chicken tender = 11 per tender.
Chicken Nuggets 10 carbs 4 nuggets.
Choc Milk 26 carbs for 8 oz
Pretzel bread stick in Canada 17 per stick. (boy are they good)

Mickey Bar 31
Mickey Ice Cream Sand 36

That was about it.

Come candies said on the food label write Disney for nutrition info. LAME LAME LAME

CalorieKing.com has a handy but larger than pocket size book you can also download the info into a palm or Treo. (It ain't cheap to load two Treos but is an OK resource.)